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My Child Has:
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Heart Transplantation
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A heart transplant is an operation performed to replace a diseased heart with a healthy one from another person.
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A heart transplant is recommended for children who have serious end-stage heart dysfunction and will not be able to live without having the heart replaced. Some of the illnesses that affect the heart in this way include complex congenital heart defects and cardiomyopathy (a disease of the heart muscle in which the heart loses its ability to pump blood effectively).
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According to the latest statistics from The United Network for Organ Sharing (UNOS), 247 children were waiting for a heart transplant in the United States on June 1, 2007 including:
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- 28 in the under 1 year age group
- 78 in the 1 to 5 years age group
- 63 in the 6 to 10 years age group
- 78 in the 11 to 17 years age group
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Nationally, children account for almost 9 percent of the 2,760 people who are on the heart transplant waiting list. Approximately 314 children receive heart transplants each year.
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Hearts that are transplanted come from organ donors. Organ donors are adults or children who have become critically ill (often due to an accidental injury) and will not live as a result of their illness or injury. If the donor is an adult, he/she may have agreed to be an organ donor before becoming ill. Parents or spouses also can agree to donate a relative's organs. Donors can come from any part of the United States. Removing an organ for transplant after a person has died is called a cadaveric transplant.
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The United Network for Organ Sharing (UNOS) is responsible for transplant organ distribution in the United States. UNOS oversees the allocation of many different types of transplants, including liver, kidney, pancreas, heart, lung and cornea.
UNOS receives data from hospitals and medical centers throughout the country regarding adults and children who need organ transplants. The medical team that currently follows your child is responsible for sending the data to UNOS, and updating them as your child's condition changes.
Criteria have been developed to ensure that all people on the waiting list are judged fairly as to the severity of their illness and the urgency of receiving a transplant. Once UNOS receives the data from local hospitals, people waiting for a transplant are placed on a waiting list and given a "status" code. The people in most urgent need of a transplant are placed highest on the status list, and are given first priority when a donor heart becomes available.
When a donor organ becomes available, a computer searches all the people on the waiting list for a heart and sets aside those who are not good matches for the available heart. A new list is made from the remaining candidates. The person at the top of the specialized list is considered for the transplant. If he/she is not a good candidate, for whatever reason, the next person is considered, and so forth. Some reasons that people lower on the list might be considered before a person at the top include the size of the donor organ, the geographical distance between the donor and the recipient, and the blood type of the donor.
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An extensive evaluation must be completed before your child can be placed on the transplant list. Testing includes:
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- blood tests
- diagnostic tests
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Tests are done to gather information that will help determine how urgent it is that your child is placed on the transplant list, as well as to ensure the child receives a donor organ that is a good match. These tests analyze the general health of the body, including the child's heart, lung and kidney function, the child's nutritional status and the presence of infection. Blood tests improve the chances that the donor organ will not be rejected. These tests may include:
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- Your child's blood type — Each person has a specific blood type: type A+, A-, B+, B-, AB+, AB-, O+ or O-. When receiving a transfusion, the blood received must be a compatible type with your child's own, or an allergic reaction will occur. The same allergic reaction will occur if the blood contained within a donor organ enters your child's body during a transplant. Allergic reactions can be avoided by matching the blood types of your child and the donor.
- Kidney, liver, and other vital organ function tests.
- Viral Studies — These tests determine if your child has antibodies to viruses that may increase the likelihood of rejecting the donor organ, such as cytomegalovirus (CMV).
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Diagnostic tests are extensive but necessary to understand the complete medical status of your child. The following are some of the other tests that will be performed, although many of the tests are decided on an individual basis:
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- Blood tests.
- Urine tests.
- Echocardiogram — A procedure that evaluates the structure and function of the heart by using sound waves, recorded on an electronic sensor, that produce a moving picture of the heart and heart valves.
- Electrocardiogram (ECG or EKG) — A test that records the electrical activity of the heart, shows abnormal rhythms (arrhythmias or dysrhythmias) and detects heart muscle damage.
- Cardiac Catheterization — A procedure in which a small, thin tube (catheter) is guided through a vein or artery into the heart in order to view the heart and blood vessels. An iodine compound (a colorless, liquid "dye") is given through the catheter and moving X-ray pictures are made as the dye travels through the heart.
- Heart Biopsy — A procedure that takes a small tissue sample for examination.
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The transplant team will consider all information from interviews, your child's medical history, physical examination and diagnostic tests in determining whether your child can be a candidate for heart transplantation.
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After the evaluation the transplant team meets to determine if your child is a good candidate. Once accepted by the team and once the family is fully educated about the risks and benefits, your child will be placed on the United Network for Organ Sharing (UNOS) list.
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During the evaluation process, you and your child will be interviewed by many members of the transplant team. The following are some of the members of the team:
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- Transplant Surgeons — Physicians who specialize in transplants and who will perform the surgery.
- Transplant Cardiologists — Physicians who specializes in the medical evaluation and treatment of heart diseases.
- Pulmonologists — Physicians who specialize in the function and disease of the lungs.
- Transplant Nurse Coordinator — A nurse who organizes all aspects of care provided to your child before and after the transplant. The nurse coordinator will provide patient education and coordinate the diagnostic testing and follow-up care.
- Social Workers — Professionals who will help your family deal with many issues that may arise including lodging and transportation, finances and legal issues. They also can help coordinate alternative means for school, so that your child does not get behind.
- Dietitians — Professionals who will help your child meet his/her nutritional needs before and after the transplant. They will work closely with you and your family.
- Physical Therapists - Professionals who will help your child become strong and independent with movement and endurance after the transplantation.
- Pastoral Care — Chaplains who provide spiritual care and support.
- Other team members — Several other team members will evaluate your child before transplantation and will make recommendations to the team. These include, but are not limited to, the following:
- infectious disease specialist
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There is no definite answer to this question. Sometimes children wait only a few days or weeks before receiving a donor organ. It may also take months or years on the waiting list before a suitable donor organ is available. During this time, your child will have close follow-up with his/her physician and the transplant team. Various support groups also are available to assist you during this waiting time.
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A major problem affecting the availability of hearts for transplant is that these organs cannot come from living donors. Kidney transplants often come from a living donor; both the person who donated a kidney and the recipient are able to live with just one remaining kidney. New techniques are making it possible for some people in need of a liver transplant to receive part of an organ from a living donor; both the recipient and the donor may be able to live successfully with just a segment of a liver. But an entire heart is needed for a human to live. Neither donor nor recipient can live with only a segment of a heart. Therefore, people in need of a heart transplant must wait for the death of a person who generously decided to share his/her organs.
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Availability of donors for heart transplantation also is affected by the size of the child needing the transplant. For instance, an adult donor heart cannot be transplanted into an infant because the infant's chest is simply too small to accommodate the large organ. Children must usually wait for an appropriately sized organ to become available.
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As of May 15, 2000, new UNOS guidelines were established to give preference to children under 18 on the waiting list, before adults, whenever a heart from an adolescent donor (aged 11 to 17) becomes available.
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You will be notified by phone or pager that an organ is available. You will be told to come to the hospital immediately so your child can be prepared for the transplant. Your child will be instructed not to eat anything following the call.
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Once an organ becomes available to your child, you and your child will immediately be called to the hospital. This call can occur at any time, so you should always be prepared to go to the hospital. Once at the hospital, the child will have final blood work and tests to confirm the match of the organ.
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The child will then go to the operating room. The transplant surgery may require several hours, but will vary greatly depending on each individual case. During the surgery, a member of the transplant team will keep you informed on the progress of the transplant.
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After the surgery, your child will go to the cardiac intensive care unit (CICU) to be monitored closely. The length of time your child will spend in the CICU will vary based on your child's condition. After your child is stable, he/she will be sent to the special unit in the hospital that cares for heart transplant patients. Your child will continue to be monitored closely. You will be educated on all aspects of caring for your child during this time. This will include information about medications, activity, follow-up, diet and any other specific instructions from your child's transplant team.
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Rejection is a normal reaction of the body to a foreign object. When a new heart is placed in your child's body, the body sees the transplanted organ as a threat and tries to attack it. The immune system makes antibodies to try to destroy the new organ, not realizing that the transplanted heart is beneficial. To allow the organ to successfully live in a new body, medications must be given to trick the immune system into accepting the transplant and not thinking it is a foreign object.
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Many patients have rejection with no symptoms. In patients with symptoms, the following are the most common symptoms of rejection. However, each child may experience symptoms differently. Symptoms may include:
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- fever
- decreased urine output (fewer diapers than usual)
- elevated heart rate
- fast breathing rate
- abdominal pain, vomiting
- weight gain
- irritability
- poor appetite
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Your child's transplant team will instruct you on who to call immediately if any of these symptoms occur.
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Medications must be given for the rest of the child's life to fight rejection. Each child is unique, and each transplant team has preferences for different medications. Some of the anti-rejection medications most commonly used include the following:
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- cyclosporine
- tacrolimus
- mycophenolate mofetil
- prednisone
- azathioprine
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Because anti-rejection medications affect the immune system, children who receive a transplant will be at higher risk for infections. A balance must be maintained between preventing rejection and making your child very susceptible to infection. Blood tests are performed periodically to measure the amount of medication in the body, to ensure your child does not get too much or too little of the medication. White blood cell counts also are an important indicator of how much medication your child needs.
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This risk of infection is especially great in the first few months, because higher doses of anti-rejection medicines are given during this time. Your child will most likely need to take medications to prevent other infections from occurring. Some of the infections your child will be especially susceptible to include oral yeast infections (thrush), herpes, and respiratory viruses.
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Your child will have very close follow-up with the transplant team after leaving the hospital. This will allow for close monitoring of your child and the function of the transplanted heart. Follow-up visits in the clinic may include the following:
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- complete physical examination
- blood work
- echocardiogram
- cardiac catheterization with biopsy
- continued education for you and your child
- medication changes
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Children who have received a heart transplant will need life-long follow-up with physicians who are specialized in transplant medicine. Keeping appointments with your child's transplant physician, as well as maintaining contact with the transplant team when symptoms of rejection occur, is vital. Parents (and the recipient, when old enough) are the first line of defense; they must understand and recognize the symptoms of rejection, and report them as soon as possible to the transplant team.
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Living with a transplant is a life-long process. Medications must be given that trick the immune system so it will not attack the transplanted organ. Other medications must be given to prevent side effects of the anti-rejection medications, such as infection. Frequent visits to and contact with the transplant team are essential. Knowing the symptoms of organ rejection (and watching for them on a daily basis) is critical. When the child becomes old enough, he/she will need to learn about anti-rejection medications (what they do and the signs of rejection), so he/she can eventually care for himself/herself independently.
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How long a child can be expected to live after a heart transplant is uncertain. Every child is different and every transplant is different. Results continually improve as physicians and scientists learn more about how the body deals with transplanted organs and search for ways to improve the success of transplantation.
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Complementing the Cardiovascular Program of Children's Hospital Boston is the nation's most intensive clinical and basic research program focused on pediatric heart disease. Children's is a world leader in opening new avenues of "translational research," bringing laboratory advances to the bedside and doctor's office as quickly as possible. All senior medical staff members of the Cardiovascular Program participate in clinical research activities.
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Since its inception in 1986, the Heart Transplant Service has become one of the largest pediatric transplant programs in the country.
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Contact Children's Hospital Boston Cardiovascular Program physicians for a second opinion.
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